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Increasing Fees, Decreasing Access to Data in New CMS Proposal

by Tara Cepull, MA | Apr 25, 2024 | CMS-lca, Essential, Lab Industry Advisor

New policies aim to better protect data against increasing cyberattacks, but academics say the changes will limit critical research

In January, the Biden-Harris administration promised to increase transparency and access to Medicare information, aiming to drive improvements in health care for the population served.¹ However, there is now a Centers for Medicare & Medicaid Services (CMS) proposal to the contrary: increased fees associated with and limited user access to the CMS beneficiary and claims data that historically has directly informed public policy and legislation and supported major healthcare reforms. Though parts of the new policy are slated to take effect as early as August 19, the comment period has been extended to May 15. New comments received in that expanded timeline could therefore impact the rollout dates proposed.²

Access: More costly, yet more limited

Previously, CMS data could be requested by academics for as little as a one-time $20,000 fee, and the data could be stored on university computers that met data protection requirements. More information and access by additional users could be added for an extra cost.³

The new proposal from CMS would have a starting cost of $35,000 for one year of access by one user.⁴ Though CMS has emphasized that researchers will no longer need to pay for the storage and protection of the data themselves given that they would utilize a platform provided and maintained by CMS, academics point out problems with the approach. Key issues include more limits in terms of access by their researchers and potential difficulty performing statistical analyses on the data within the CMS-provided platform to inform future health initiatives.

Why limit access now, especially after promising more transparency?

Lab leaders have probably heard about the late February cyberattack on Change Healthcare, a subsidiary of UnitedHealth Group that aims to make clinical, administrative, and financial processes simpler and more efficient for payers, providers, and consumers. This attack has had far-reaching impact on billing, eligibility checks, prior authorization requests, and prescription drug fulfillment. With such healthcare related cyberattacks becoming more common, all individuals and organizations across the healthcare landscape need to take additional precautions to keep user and beneficiary information secure. CMS’s new proposal to increase cost and limit accessibility of claim information data seems to be an attempt to do just that, albeit counter to the Biden-Harris administration’s promises to increase transparency and available information in order to positively impact healthcare access and reform.

What’s the big deal? Don’t we want healthcare data to be secure?

The problem with the current proposal, as stated in an open letter to CMS that has been signed by more than 300 academics, is that this beneficiary and claims data is used in research that informs public health policies, reform, and legislation. Increasing fees and limiting access will reduce the number of research studies that can be effectively conducted, the letter points out. Important topics such as the Affordable Care Act, the Medicare Advantage program, the opioid epidemic, and others have been evaluated and better understood through research by academics using CMS data.⁵

The letter notes that past research has “improved public policy, led to reductions in mortality, likely led to billions of dollars of savings for the federal government, and reduced Medicare fraud” but will be curtailed by this new CMS proposal.⁵

“Making CMS data inaccessible to most researchers will make our healthcare economy less efficient,” comments Steven D. Pizer, PhD, in an email. Pizer is a professor of health law, policy, and management, and one of the academics who signed the letter.

“CMS data has been crucial for countless policy and program evaluations including developing payment systems for Medicare Advantage health plans and evaluating innovations like paying for quality and value,” added Pizer, who is also the chief economist at the Partnered Evidence-based Policy Resource Center at the U.S. Department of Veterans Affairs.

Zack Cooper, PhD, an associate professor of public health and economics at Yale University who compiled the letter’s list of high impact research conducted using claims data obtained from CMS, told ProPublica that the agency’s proposal will “make research harder not easier.”⁴

Research projects can include several contributors and take years to complete; limiting the number of users who can access the research data will significantly lengthen the timeline for completing projects or cause a drastic increase in the cost needed for the project to remain on a reasonable schedule. Many researchers won’t have the budget to cover the additional expense, including PhD students, who likely won’t be able to afford even the single user fee. Less research utilizing CMS data, and thus, less information to support continued public health reform, is inevitable, according to the letter.

How might this affect my lab?

Though the CMS proposal won’t affect laboratories’ operations today, it could lead to fewer needed healthcare reforms and policies in the future, as there will be less research to base said changes on. This lack of improvement could affect the patients labs serve and laboratories’ ability to serve those populations. Fewer studies could also mean less information available to lab leaders about major trends in healthcare and how those developments are affecting lab services. According to CMS data, as of December 2023, there were nearly 67 million enrolled Medicare beneficiaries.⁶ The Centers for Disease Control and Prevention says that, each year, 70 percent of medical decisions depend upon 14 billion laboratory tests.⁷ Given the number of people whose health care is supported by Medicare, continued assessment and reform of public health policies and programs is necessary to ensure appropriate delivery of high value services, including laboratory testing.

While most of us want our health information to be secure and remain private, the academics who are petitioning want CMS to find another way of doing so that does not concurrently hinder the important research used to form the basis of public health initiatives.